Sunday, December 20, 2009
..... round 3 week 3
.... Christmas is coming and for the most part I am ready to go.... although I did not do much in the way of baking (I cheated with my favorites from a specialty store) I still have treats and the presents that I purchased online.... not to mention the traditional spiral ham from Loblaw (pronounced in our house - blah blah). I love Christmas and mostly because it is spent with my family!! It is the first year that I do not feel rushed or that I am forgetting anything and I know that it will be such a great time. I have left out the doll catalog and Lydia has been hounding me now for days and she has been circling all the things she wants to go with the doll she is sure she has willed herself to get...... a few feet away tucked in a hiding spot sits the very items that she has circled and it is hard not to play the game of 'whatever will you do if you do not get it' she has promised to promptly leave. I am glad she will be staying!!
Friday 18th December
Feeling a malaise today that has me in tears by late afternoon which spilled over when Max calls...... I am in agony and I fear I have a blockage in my bowel... my temperature is rising and so is my concern. I have a condition which is now complicated and will compromise my well being if something is not done to correct it. Max soothes my worry and makes an attempt to come home as early as possible - he has gone to the pharmacist who has called to talk to me. Max has brought home Ducolax and I have taken 2 of these pills but the temperature begins to spike past the 38 degrees C and a call to the emergency on call Oncologist. The doctor will call me back - they have to determine whether they have a bed available. The phone rings a minute later and I feel guilty for hanging up on my mother-in-law and call to Max to give her a ring on his cell.... now let's see, that is probably the third time I have hung up on her!! Wonder if she is sensing a bit of a trend here.... nothing personal Mom :) xo The call comes in a minute after that and there is a bed available - we are given the tower number, floor and bed number - a direct route that I am grateful to have been offered as another stab of pain hits me in the left side just under the ribs. I have a nurse meet me and she quickly takes my blood pressure or tries to but the machine has taken on a life on its own and now the pain in the ends of my fingers quickly diverts my attention away from the reason I am there.... the renegade machine can't get a read and continues to tighten the cuff - my fingers instantly jolt with lightening bolts of pain.... still no pressure reading despite the instant blood loss to my entire limb!! Oh well, time to do a manual read. Blood tests need to be taken to see if my counts are up and to see if there is any sign of infection and of course urine. The patient in the bed next to me is not well and his eyes flicker open as I pass by the opening in the curtain to get to the washroom. With no real distinctive facial features and the typical yellow skin, I would be hard-pressed to recognize him in a line-up. The Doctor comes in a few minutes later and after an examination has noted that I have a blockage and he will try to determine where.... it is of course out of reach and he is unable to do anything for me other than antibiotics and oral medication. I am grateful that I am not spending the night. Max goes to the pharmacy and has picked up no less than 5 meds ranging from mild natural senokot to an equivalent to intestinal draino.... we start off easy....
Saturday 19th December
The day is spent with Max doing some errands and staying out of the population.... I need to walk and keep moving at least physically. I run into an old neighbor of mine and she has already heard about my journey and quickly reminds me that she is now 21 years cancer free... she had her breast removed but never had reconstructive surgery and never bothered to wear a bra to hide the obvious... she is in her early 70's and knows that that is the least of her concerns. She has always had a positive can-do attitude and we hug after a few more minutes of conversation. My journey is filled with people who amaze me and I am learning so much.... like the breast we both had cancer in also gave us grief with blocked milk ducts when nursing which became infected - Mastitis http://www.mayoclinic.com/health/mastitis/DS00678/DSECTION=symptoms
She is not the only one to tell me this and it has been my suspicions for quite a while now..... it was painful nursing and I could never seem to clear the one duct no matter what. Any sign of this in a nursing mother should be seen by a doctor.
Very little movement going on and I am concerned - time to step up the meds and increase the fiber..... you would think this would be effective....
I attend an annual neighborhood gathering for a few hours but fatigue calls to me and I wish all my wonderful neighbor friends a Merry Christmas and a promise of more gatherings around the pool this summer. Thank you Sue for always being the consummate host and for making the fresca (non-alcoholic) drinks yummier by putting it in a fancy crystal fluted glass. xoxo
Sunday 20th December
Fully expecting that the 48 hour mark would prove to be a medical milestone...... still waiting but this time I have used the big guns....... and still waiting. Once the blockage passes (in its own good time) I have been warned that the next round of chemo will be using a considerable amount of anti-nausea medication that will only increase the problem so I have to get it under control and be diligent.... I have just over a week to achieve this goal. Apparently this is a very common issue and most patients are not seen until the pain becomes intolerable.... hmmm, sounds familiar. It is not a great topic of discussion but still needs to be addressed and not forgotten.
My face has broken out - a clear sign that toxins are not leaving..... sigh!!
Tuesday 22 December
Still battling away at clearing the intestines and have virtually given up on eating very much... the doctor said it would clear within 48 hours and unfortunately I have reduced myself to taking the last ditch effort medicine affectionately named 'dynamite'. After 3 days of this and other fiber etc to try and clear the block - I am gaining little ground - just enough to gain some comfort but still feeling like I ate a huge Christmas dinner.
I spend the day doing decorations with Lydia and watching the movie 'Inkheart'. What I really want to do is to go outside to play and have decided that tomorrow, we will do just that despite the fact that there is no snow outside other than a slight dusting. Christmas is in 2 days and I can feel the excitement in the kids.... if only, Mitchel says, he did not have to wear the paper mask he has had to over the past 3 days. Unfortunately he has acquired a cold and must now protect me from contracting the same one... so far so good but it is hard on him and he is struggling with the whole idea but his cough and low-grade fever means he will likely be wearing it for another few days. I get a call from the neighbor whose young son has broken out in chicken pox and she is fearful that I will now get ill as she had brought him out to the neighbor gathering on Friday night. No worries, we have all had the chicken pox...
Max and I are getting ready for bed and I head off into the shower. He is watching You Tube music videos when I slip into the shower. I still use shampoo on my head despite the fact that there is the odd patch of stubble.... it was recommended so that the soap doesn't dry out my scalp like it is doing to my skin. I am looking slightly yellow - sallow cheeks and dark rings under my eyes. I am toweling off and ask Max to please bring me my medicine... it should be on the counter downstairs - hard to say anymore because I will put something down and a minute later forget where it is and then spend a few frustrating minutes trying to remember.... chemo brain.... I open the door, after shoving the cap on my head - it gets cold fast, and realize the Bryan Adams song that is playing is off an album that received no real air time because of the Lyrics but it is one that Max used to play for me when we were first dating and the tears brimmed and then fell in torrents down my face soon followed by sobs and by the time Max reappeared in the bathroom he was surprised to find me red-eyed. The song reminded me of a carefree time in our partnership when I wasn't scarred, bald or disfigured by bloating..... life will never be the same ever again and God, what if it comes back?? I have been reading a book that talks about the cancer journey with husbands and wives and one of the last chapters discusses the reality of passing and I feel for the husbands that stand by their wives in their last days and I think about my children and my soul mate and I catch that deep rooted sadness that so many people must journey through. I tell Max in a torrent of tears as we sit facing one another on the bed that I am not finished with my journey... there are things that I have not done and children left to raise. There is only one way to go and that is forward.... tears dry up and with my vulnerability tucked back in, it is time for bed.
Sleeping was difficult... night sweats and an uncomfortable stomach.... and a song by Pink playing over and over in my head - 'this used to be a fun house, but now it's full of evil clowns'.... reflects a recent dream of a house covered in ivy and the inside was chaos - untidy and stuff just thrown around in piles. My emotional life is always incorporated into dreams of houses in various states - I dreamt of an empty house with dirty windows next to a pond with black still waters a few days after my first marriage dissolved. This dream means that my life is in chaos but well camouflaged. Thankfully the bad days are few and far between and I am able to keep my spirits up. I get asked often if 'they got it all' and I honestly cannot answer that because even the professionals do not know - every one is different and only time will tell. I am still in the middle of my journey. It has helped tremendously to be open and honest with my feelings and emotions especially with Max who would have no idea otherwise - some days, I make it look easy.
Wednesday 23rd December
Lydia has a sinus infection today... I can smell it so I get her to use the Neti Pot and voila I am right - only she also has blood in the mucous which has me concerned that this has been going on for quite some time. At the Doctor's office, it is determined that mommy is right and a script is drawn up for an antibiotic... a saving grace for Christmas.
On the way home, my Oncologist calls to inform me that in fact I do have an infection and he is concerned about that and the other symptoms that I am exhibiting and would like to see me in the morning after my blood tests. I am hoping that we have good news so that we can get on with the next treatment on Tuesday. I am on antibiotics and hope that the infection will have resolved itself.
It was nice getting an email from Bev - I missed all the girls at Art Therapy too!! I was not up to it on Tuesday but I will see everyone in the New Year.
Thank you to Sandra Moyer for the lovely gift and card... I really missed seeing you today but I needed to take Miss Lydia to the doctor. Sending all my very best to you, Joel and the kids. Love you!!
I am wishing every one the very best Christmas and a very Happy New Year!! No matter how you celebrate or what your religion is, you can be sure that I am sending you our very best for a spectacular New Year filled with Love and laughter. Make everyday count!! xoxo
Some Facts about my cancer:
STAGE - I am a stage IIA - My lesion is under 2 cm but has spread to the nodes. Because it has been found in the nodes it is considered invasive (on the move) which is why Chemotherapy followed by Radiation is highly recommended. Lesion is a term to describe a tumor. There are in total 5 stages in cancer with substages to describe more accurately the individual involvement.
DCIS - Ductal Carcinoma in situ - my cancer started in a milk duct and likely the one which had mastitis - in my estimation never really healed. My breast remained tender even after I finished nursing my last child and it never occurred to me to have this checked more closely. Other than the tenderness that occurs in pregnancy or prior to menstruation... your breasts should not be tender or painful - seek out medical advice and pay attention to any changes. Four out of Five breast cancers today are invasive. Early detection is critical to a good prognosis. Fear will only delay your treatment and cause anxiety. I have had a number of girlfriends that have sought medical attention after hearing my diagnosis - it never hurts to ask for an ultra-sound or mammogram if you are anxious - this sets a baseline for future tests. One of my girlfriends had a number of lumps in her one breast but felt that if I could be brave enough so could she and found to her relief that they were cysts. She is now in the system and will be checked annually.
Lumpectomy - the removal of the lesion and tissue surrounding it. The margins - refer to cancer free tissue surrounding the lesion - must exhibit no signs of cancerous cells. In my case the margins in the first surgery were not clear and as a result, I required another surgery to remove more tissue and an axillary dissection of the under-pit lymph nodes. It is common in breast conservation surgery to go in more than once as the Surgeon's goal is to remove all cancer but to conserve as much of the breast as possible. The size of the breast and the lesion will determine whether it can be done.... I was fortunate that I had enough tissue to conserve the breast. Mine involved removing the lump which was 4 cm x 4 cm x 4 cm with a margin of 2 cm in the first surgery and then an additional tissue removal on the second surgery.
Lymphedema - it is the swelling that occurs when lymphatic fluid cannot be drained into the lymph nodes that have been removed by surgery (I had 32 removed) and the excess fluid sits in the limb. I have a mild edema that is controlled through the use of an appliance - a sleeve I wear daily to prevent a build-up of fluid in my arm. This can easily get out of control with an injury or excessive pressure on the limb affected. I sought out my family doctor who knew what she was looking at and immediately referred me to a lymph masseuse and an edema sleeve fitter. I do not wear a gauntlet (hand compression glove) because the swelling stops short of my hand. Symptoms - tightness of the skin and a rippling look along the inner arm. Any injury requires immediate attention... even nicks to the skin need to have antibiotic cream and a bandage applied - I have a prescription for an oral antibiotic in my purse just in case.
Chemo Brain - this is very much like Baby Brain - the inability to remember things and the fog associated with everyday life - not being able to sometimes do simple tasks. It is a frustrating part of the Chemo process and just as you get most of your mental faculties back... your next chemo is due!! This can continue some time after the treatments are done.
Night Sweats - this is the slick clammy layer of moisture found on every inch of your body which started with chemo - women who are pre-menopausal can find themselves in instant menopause with the beginning of chemo and may return to 'normal' once this ends..... me, not so lucky... have all the menopausal symptoms but with the menstruation - albeit light, it is still there. Some nights I find I get the shakes like I have a fever and after tossing blankets on and off will often find myself getting up.
Hair loss - it is just a rumor that you actually lose all your hair... you actually lose it in stages starting around the 12-16th day after chemo begins with some patches remaining. I had to use a shaver on the sporadic patches on the top of my head that became rigid but did not fall out. It is recommended to use an electric shaver to avoid the possibilities of nicks and scrapes. I did keep my eyebrows although they did thin it was the one thing I had hoped to keep - it is the frame for your eyes and the way we express emotion!!
Symptoms to look for after treatments:
These symptoms can be indicative of a return to cancer which can occur at any time.... coughing, shortness of breath, morning headaches, bone pain, breast pain.